Recurring colon cancer

aleftina · November 2003

I've just been diagnosed with inoperable Recurring colon cancer, it's stuck to the outside of the colon and other organs. They are talking second round of chemo, this time to try CPT-11 first and see if I respond, if not - then Oxaliplatin. Chances of respond between the two drugs is 40% said the onc., that's complete and partial responce together, I asked how many percent is the complete responce, he said it's very low but it happens, the main thing that you have 40 percent chance to manage the cancer, meaning to stop it from spreading. Is 40% good, I am horrified, to me it's very low, considering the side effects and the effect of these drugs on the immune system. What did your doctors say, and what treatments are you taking for metastatic cancers? Thank you in advance for all the info, I am still in shock and don't know what to do.

pjenks57 · November 2003

I don't know how you really feel but my husband was just diagnosed in September with what sounds to be close to yours. He is doing oxaliplatin and Xoloda and very little side effects so far. He is however only just completed cycle 2 of 6 so we shall see. As for our % the onc will not say but says that there have been MAJOR advances in colon cancer in the past 5 years. You will get answers from others who will give you positive outcomes. They have helped me by reading their stories. They have given me hope and didn't even know it. There is hope and there is life with cancer and chemo. This is A LOT easier to say than to do but you will have to take each day one day at a time and learn to deal with the waiting, worrying, and wondering. But remember you are loved and love is Very important.

spongebob · November 2003

Aleftina -

First let me say that I - thank the Lord - don't have mets. Next let me say that you need to throw those percentages right out the window. Cancer doesn't pay attention to odds and neither should cancer patients. I completely understand how horrorfied you are - many here have been in that position of having your world yanked out from under you. The important thing to hold onto is that cancer can be managed and even cured - many here (many with mets) are LIVING proof of that. It's your job to grasp hold of the positive things and keep focused on them - even when things seem that they can't get any worse. There is a silver lining - it's our job to find it (sometimes that's quite a task!)

You hang in there, gather your resolve, and dig in for a good fight. There are lots of folks here who are in the trench with you, but only you can finish the fight. Anytime you feel the need to vent, share, or just be mad as hell - come here and let it go.

We're here for you!

Have a great Thanksgiving - and do me, your family, and (most importantly) yourself a favor; find three things to be thankful for this year.

Keeping you and your family in my thoughts and prayers.

- SpongeBob

aleftina · November 2003

spongebob said:
Aleftina -

First let me say that I - thank the Lord - don't have mets. Next let me say that you need to throw those percentages right out the window. Cancer doesn't pay attention to odds and neither should cancer patients. I completely understand how horrorfied you are - many here have been in that position of having your world yanked out from under you. The important thing to hold onto is that cancer can be managed and even cured - many here (many with mets) are LIVING proof of that. It's your job to grasp hold of the positive things and keep focused on them - even when things seem that they can't get any worse. There is a silver lining - it's our job to find it (sometimes that's quite a task!)

You hang in there, gather your resolve, and dig in for a good fight. There are lots of folks here who are in the trench with you, but only you can finish the fight. Anytime you feel the need to vent, share, or just be mad as hell - come here and let it go.

We're here for you!

Have a great Thanksgiving - and do me, your family, and (most importantly) yourself a favor; find three things to be thankful for this year.

Keeping you and your family in my thoughts and prayers.

- SpongeBob

Thank you so much for your replies, pjenks and spongebob! They are enourmously encouraging! I am not in the state of paralilzing fear yet, try to look at my situation soberly and decide what treatment to take. Chemo with 40% chance of survival, just wasn't promissing enough. Is this the best they've got to treat us with? I am angry that nothing better exists. We deserve better! What are they doing in other countries, does anyone know?

Anyway, I am unhappy about the chemo, it weakens your immune system, makes you sick, I wish there was a better way.

Thank you for all your good wishes. It's good to talk to people who are/were in the same shoes. At least no one feels sorry for you. Even my doctor speaks to me like a mortician, and I have to cheer him up.

Happy Thanksgiving to you all and thank you for your encouragement. I'll be baaack.

Aleftina

2bhealed · November 2003

aleftina said:
Thank you so much for your replies, pjenks and spongebob! They are enourmously encouraging! I am not in the state of paralilzing fear yet, try to look at my situation soberly and decide what treatment to take. Chemo with 40% chance of survival, just wasn't promissing enough. Is this the best they've got to treat us with? I am angry that nothing better exists. We deserve better! What are they doing in other countries, does anyone know?

Anyway, I am unhappy about the chemo, it weakens your immune system, makes you sick, I wish there was a better way.

Thank you for all your good wishes. It's good to talk to people who are/were in the same shoes. At least no one feels sorry for you. Even my doctor speaks to me like a mortician, and I have to cheer him up.

Happy Thanksgiving to you all and thank you for your encouragement. I'll be baaack. Aleftina

Hi Aleftina,

I didn't do chemo. There ARE other ways---your onc just doesn't tell you about them. They act as if there are no other treatments. There are many but they are outside the mainstream medical establishment.

www.hacres.com
www.drday.com
www.curezone.com

Start looking and you'll find something.

I ignored the stats of the general public. My own personal family stats were what scared me most. Grandfather-cancer-chemo-rad-dead. Aunt-breast cancer-chemo-rad-dead. Sister-adenocarcinoma of sm. intestine-chemo-rad-dead at 33 yrs. No thank you. I'm allergic to Tylenol for crying out loud. I shuddered to think what 5-FU would do to me!!

Use your anger to search for other answers.

peace, emily

aleftina · November 2003

2bhealed said:
Hi Aleftina,

I didn't do chemo. There ARE other ways---your onc just doesn't tell you about them. They act as if there are no other treatments. There are many but they are outside the mainstream medical establishment.

www.hacres.com
www.drday.com
www.curezone.com

Start looking and you'll find something.

I ignored the stats of the general public. My own personal family stats were what scared me most. Grandfather-cancer-chemo-rad-dead. Aunt-breast cancer-chemo-rad-dead. Sister-adenocarcinoma of sm. intestine-chemo-rad-dead at 33 yrs. No thank you. I'm allergic to Tylenol for crying out loud. I shuddered to think what 5-FU would do to me!!

Use your anger to search for other answers.

peace, emily

Thank you, Emily. Great info! Especially curezone. I will try to follow as many guidelines as possible as soon as possible. I think I started already with spiritual cleansing. I do believe healing is spiritual. Body cleansing sounds good too, I had too many chemicals pumped into me. God bless you, Emily. Happy Thanksgiving to everybody! I am having a little of Pumpkin Pie with whipped cream!

andreae · November 2003

Hi,

Firstly, I know how tough it is. It's very scary to have cancer growing inside of you and to have every place you turn throw horrible statistics around. My heart goes out to you and I'll keep you in my thoughts and prayers. On a medical note, I was diagnosed with multiple pulmonary mets. back in September during a regular CT. I had just finished my 9 month protocol to treat stage 3 rectal cancer and they thought the cancer was all gone so needless to say, I was pretty devasted. But, I immediately sought several opinions from different oncologists and did my own research. There are some great drugs out there. Right now I'm on Xeloda and oxaliplatin. Initially, they had problemes dosing me but now it's all good and I have no side effects. I'm going to my classes, writing finals, going to movies, etc. I'm being assessed after two rounds to measure my response. I already have a game plan if treatment is failing me. Erbitux, an EGFR inhibitor, is looking promising as is Avistan, so I'm going to look into those if this chemo doesn't work out. I'm also looking into surgery and radiation ablation. The situation is frightening because I never know what tomorrow is going to bring but I'm living it up as best as I can and I just keep hoping. All the best and I will be thinking of you and keep us updated.

-Andrea

aleftina · November 2003

andreae said:
Hi,

Firstly, I know how tough it is. It's very scary to have cancer growing inside of you and to have every place you turn throw horrible statistics around. My heart goes out to you and I'll keep you in my thoughts and prayers. On a medical note, I was diagnosed with multiple pulmonary mets. back in September during a regular CT. I had just finished my 9 month protocol to treat stage 3 rectal cancer and they thought the cancer was all gone so needless to say, I was pretty devasted. But, I immediately sought several opinions from different oncologists and did my own research. There are some great drugs out there. Right now I'm on Xeloda and oxaliplatin. Initially, they had problemes dosing me but now it's all good and I have no side effects. I'm going to my classes, writing finals, going to movies, etc. I'm being assessed after two rounds to measure my response. I already have a game plan if treatment is failing me. Erbitux, an EGFR inhibitor, is looking promising as is Avistan, so I'm going to look into those if this chemo doesn't work out. I'm also looking into surgery and radiation ablation. The situation is frightening because I never know what tomorrow is going to bring but I'm living it up as best as I can and I just keep hoping. All the best and I will be thinking of you and keep us updated.

-Andrea

Thank you, Andreae. It's so good to hear from people who are going through the same and know what you are feeling. It is amazing that you have no side effects from Xeloda/Oxaliplatin. When you say rounds, what do you mean? I want to know after how many times they can tell if the meds are working. My problem is the port, I have small veins, I must have a port, but it takes an hour to stick it into my vein, it takes me forever to recover from the port surgery. And then I can lift my arm for a year AFTER they remove it. So I am hoping to go without chemo. Andreae, do not make plans, do not look forward to new drugs ahead of time. The mind might want to arrange it for you. I took hypnotherapy classes, and learned that what ever you put into your mind, it will work very hard to fulfill it. Plan on not needing any new drugs, but if the time comes, you will make a decision to take or not to take it. I stopped plannig a lond time ago, just take it as it comes. I expect miracles too, every day I am open to the possibility to lose the tumor, it's outside my colon this time, I am hoping it will just slide out of me one day. It's a possibility. Thank you for your prayers and encouragement. This is better than drugs.

))

Unknown · December 2003

2bhealed said:
Hi Aleftina,

I didn't do chemo. There ARE other ways---your onc just doesn't tell you about them. They act as if there are no other treatments. There are many but they are outside the mainstream medical establishment.

www.hacres.com
www.drday.com
www.curezone.com

Start looking and you'll find something.

I ignored the stats of the general public. My own personal family stats were what scared me most. Grandfather-cancer-chemo-rad-dead. Aunt-breast cancer-chemo-rad-dead. Sister-adenocarcinoma of sm. intestine-chemo-rad-dead at 33 yrs. No thank you. I'm allergic to Tylenol for crying out loud. I shuddered to think what 5-FU would do to me!!

Use your anger to search for other answers.

peace, emily

This comment has been removed by the Moderator

aleftina · December 2003

unknown said:
This comment has been removed by the Moderator

Jose, talking to my doctor is useless, he only approves of chemo and surgery. I can't have surgery, so it's only chemo as he is concerned. I do know that there A LOT of scoundrels out there who pray on the cancer patients, and one must be very careful. I talk to someone on the internet who knows a lot about alternative medicine and I run it by him first. Thank you for your advise and warning, and for the links, they are very good. Tina

Unknown · December 2003

aleftina said:
Jose, talking to my doctor is useless, he only approves of chemo and surgery. I can't have surgery, so it's only chemo as he is concerned. I do know that there A LOT of scoundrels out there who pray on the cancer patients, and one must be very careful. I talk to someone on the internet who knows a lot about alternative medicine and I run it by him first. Thank you for your advise and warning, and for the links, they are very good. Tina

This comment has been removed by the Moderator

KrisS · December 2003

aleftina said:
Thank you, Andreae. It's so good to hear from people who are going through the same and know what you are feeling. It is amazing that you have no side effects from Xeloda/Oxaliplatin. When you say rounds, what do you mean? I want to know after how many times they can tell if the meds are working. My problem is the port, I have small veins, I must have a port, but it takes an hour to stick it into my vein, it takes me forever to recover from the port surgery. And then I can lift my arm for a year AFTER they remove it. So I am hoping to go without chemo. Andreae, do not make plans, do not look forward to new drugs ahead of time. The mind might want to arrange it for you. I took hypnotherapy classes, and learned that what ever you put into your mind, it will work very hard to fulfill it. Plan on not needing any new drugs, but if the time comes, you will make a decision to take or not to take it. I stopped plannig a lond time ago, just take it as it comes. I expect miracles too, every day I am open to the possibility to lose the tumor, it's outside my colon this time, I am hoping it will just slide out of me one day. It's a possibility. Thank you for your prayers and encouragement. This is better than drugs. ))

Hi Aleftina-

I have stage 4 rectal ca and had been on oxaliplatin/5 FU last winter 6 treatments before a surgery to try to cure my peritoneal mets, and then started on it again in June when I developed more mets. I was fatigued, coughing constantly from a large lymph node met and painful from a liver met. My oncologist had not thought I would respond again to oxaliplatin although a second oncologist thought it was worth a shot.

I started feeling better in about 3-4 wks after restarting, and at my CT done 8 wks later my lymph nodes and liver met had shrunken "markedly". From what I have read this is not an unusual time frame in which to see a response. At the 16 wk CT scan they could no longer see my liver met. I just got my 24 wk scan this AM so I won't know results until tomorrow.

Everyone responds a bit differently to chemo. I also feel fairly tired the first 3-4 days post treatment. My feet and hands get a bit sore on days 4-5. I worked, although I cut my load about 20 percent, while I was on chemo last winter. I left my job in Maryland in June because things were looking worse, and because I had no family anywhere close. I flew back to Maryland, however, 2 wks ago, getting up at 5 AM after having chemo the afternoon before. I worked for 4 days and had Thanksgiving with old friends. Not optimal- and I would not want to do that every week, but I managed.

As for getting a port. I love mine. I have heard that most everyone who gets oxaliplatin eventually gets a port because apparently your arm can get uncomfortable after infusions into the smaller veins there.

I got mine 6/02 just after I had been diagnosed with rectal Ca. It was days after diagnosis and I did not want to tell anyone but family about it yet. I went to the hospital and had it put in with a local anesthetic and drove back to work two hours later. I took one Vicodan that night because the interventional radiologist said I would not sleep well otherwise. I think the key is to have someone very good put it in. My oncologist wanted only this one person to put mine in. The major thing this interventional radiologist does is vascular access.

I had a friend that had discomfort over her clavicle the whole time she had her port in. This guy told me that if you are quite thin, having the catheter run over your clavicle can be uncomfortable so he put it all below that. If you are heavier, they can't get in the vessel below your clavicle but it won't be uncomfortable if it runs over it. He also put in a thin profile one because I am thin, and positioned it vertically because my shoulders are narrow. I do not feel a thing. I lift weights at the gym (nothing fancy or very heavy) without a problem.

I watch carefully over anyone accessing my port to make certain they clean the skin well and are very careful with bandaging it because infections in the port can be bad and often they have to be removed in such a case. Oncology nurses and infusion therapy nurses are skilled at doing this but others may not have so much experience.

Best of wishes for a good response. My thoughts and prayers are with you.

Kris

aleftina · December 2003

KrisS said:
Hi Aleftina-

I have stage 4 rectal ca and had been on oxaliplatin/5 FU last winter 6 treatments before a surgery to try to cure my peritoneal mets, and then started on it again in June when I developed more mets. I was fatigued, coughing constantly from a large lymph node met and painful from a liver met. My oncologist had not thought I would respond again to oxaliplatin although a second oncologist thought it was worth a shot.

I started feeling better in about 3-4 wks after restarting, and at my CT done 8 wks later my lymph nodes and liver met had shrunken "markedly". From what I have read this is not an unusual time frame in which to see a response. At the 16 wk CT scan they could no longer see my liver met. I just got my 24 wk scan this AM so I won't know results until tomorrow.

Everyone responds a bit differently to chemo. I also feel fairly tired the first 3-4 days post treatment. My feet and hands get a bit sore on days 4-5. I worked, although I cut my load about 20 percent, while I was on chemo last winter. I left my job in Maryland in June because things were looking worse, and because I had no family anywhere close. I flew back to Maryland, however, 2 wks ago, getting up at 5 AM after having chemo the afternoon before. I worked for 4 days and had Thanksgiving with old friends. Not optimal- and I would not want to do that every week, but I managed.

As for getting a port. I love mine. I have heard that most everyone who gets oxaliplatin eventually gets a port because apparently your arm can get uncomfortable after infusions into the smaller veins there.

I got mine 6/02 just after I had been diagnosed with rectal Ca. It was days after diagnosis and I did not want to tell anyone but family about it yet. I went to the hospital and had it put in with a local anesthetic and drove back to work two hours later. I took one Vicodan that night because the interventional radiologist said I would not sleep well otherwise. I think the key is to have someone very good put it in. My oncologist wanted only this one person to put mine in. The major thing this interventional radiologist does is vascular access.

I had a friend that had discomfort over her clavicle the whole time she had her port in. This guy told me that if you are quite thin, having the catheter run over your clavicle can be uncomfortable so he put it all below that. If you are heavier, they can't get in the vessel below your clavicle but it won't be uncomfortable if it runs over it. He also put in a thin profile one because I am thin, and positioned it vertically because my shoulders are narrow. I do not feel a thing. I lift weights at the gym (nothing fancy or very heavy) without a problem.

I watch carefully over anyone accessing my port to make certain they clean the skin well and are very careful with bandaging it because infections in the port can be bad and often they have to be removed in such a case. Oncology nurses and infusion therapy nurses are skilled at doing this but others may not have so much experience.

Best of wishes for a good response. My thoughts and prayers are with you.

Kris

Kris, thank you so much for a wonderful post. I feel encouraged. I hope my port is installed properly this time, I think they botched it last time. I am in a predicament with a disability, my short term full time pay is running out and there is three months before the long term disability will kick in. I would like to come back to work but don't know if I could work on Oxaliplatin/Zeloda, if you had a choice, would you work or no? Or if you had to advise a loved one would you advise to work or not? I worked on 5 FU/LU but it was hard. How much harder it is on Oxaliplatin?

KrisS · December 2003

aleftina said:
Kris, thank you so much for a wonderful post. I feel encouraged. I hope my port is installed properly this time, I think they botched it last time. I am in a predicament with a disability, my short term full time pay is running out and there is three months before the long term disability will kick in. I would like to come back to work but don't know if I could work on Oxaliplatin/Zeloda, if you had a choice, would you work or no? Or if you had to advise a loved one would you advise to work or not? I worked on 5 FU/LU but it was hard. How much harder it is on Oxaliplatin?

Aleftina, Each person responds differently to chemotherapy. Also the type of job you have might alter how hard it might be to manage. A job with a 40 hr week is better than one in which more open ended commitment, longer hours are expected. Jobs like this make it hard to take care of yourself-eat well, exercise and get adequate sleep. A flexible work schedule is a help because it seems to take a minimum of 3 hrs just to get bloodwork done and the oxaliplatin. The side effects of cold sensitivity and decreased sensation may make jobs in cold environments, or ones requiring fine sensation of touch, difficult.

I found it easier to work with oxaliplatin/5-FU or Xeloda than earlier, when I was on CPT-11/5-FU. An ileostomy has made diarrhea less of an issue.

If I had family in Maryland near where I worked- I still would be there. I would have continued to cut my hours to 36-40 hrs / week instead of the 50-60 +hrs I commonly put in in the past.

If you enjoy your work, I would suggest giving it a try.

Best wishes,

Kris

Recurring colon cancer

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